Pulling Up!

Memorial Day

A Memorial Day weekend wouldn't be complete without our traditional upstate trip to the farm. Matthew is proving to be a true farm kid, just like his older siblings.

Little Troublemaker

Matthew is turning into quite an adventurer around the house. He's getting into more and more, especially the baby wipes and DVD basket, and loves to dump out baskets... toy baskets, laundry baskets, garbage baskets... He dashes to the bathroom whenever the door is left open and unfortunately has discovered the toilet (sigh). The other day I heard him making his way into the kitchen and heard some pans crashing around. Maria, my little reporter, made sure to tell me that Matthew was getting into things in the kitchen and sure enough, he had opened the bottom oven drawer that stores some baking sheets. I love it how he's discovering his surroundings and causing a little bit of trouble at the same time. Sounds just like every other one year old ;-)

He wanted a snack, I guess

A gluten filled mess

Standing up straight

Hello

Lego boy

We had Matthew's annual EI review on Monday. Everything went really well! We're going to continue with the services he receives now- PTx2, STx2, and OTx1 and it was great to hear about the progress he had made. I really like our team, they're very positive and encouraging and Mathew is comfortable with them all. With the school year coming to a close it will be nice to have more relaxed weeks at home, with therapy sessions scattered throughout the late morning/early afternoons.

I finally took him in for his 12 month bloodwork (CBC, thyroid, and a couple other checks). He was a touch guy at the lab and did well for the blood draws. His pediatrician called me yesterday saying that everything looked great, aside from his iron being a little low. This is common around this age for our kids though so I wasn't surprised. Poor kid had a rough week, waking up more at night crying and had a slight fever, most likely teething related since I noticed a couple of ridges in his bottom gumline today.

12 Months of Matthew

Matthew is 13 months old today! I'm kicking it off by sharing his monthly pictures, taken next to a bear from 1 to 12 months. I've done this with each of our kids and it's a fun way to see their growth throughout the year.

Life as a 12 month old

We saw many family members over the weekend who mentioned how they enjoyed reading Matthew's blog. I promised them some more updates since I've slacked off and haven't posted in nearly a month! Our typical week now consists of school work for Maria in the morning, therapy sessions in the afternoon, a couple nights of soccer & dance, a busy work schedule for Michael, and chores and various activities filling up our weekends. We've had doctor appointments for Matthew, both his 12 month well-check and a visit to the cardiologist. He weighted in at 18.5 lbs, and 28.5 and had a lousy reaction to his MMR vaccine 10 days after (covered in red bumps and a fever). His PFO in his heart is still there but should decrease in size, no invasive surgery necessary. We don't need to return to the heart doctor for another year. I still need to get to the lab to do Matthew's CBC and thyroid tests but it's on my list.

We have a fully loaded therapy schedule now, with PT 2x/week, speech increased to 2x/week, and OT 1x/week. OT (occupational therapy- fine motor skills) is our most recent addition and our therapist, Melissa, is awesome. All of the sessions are generally held on Tu-W-Th, allowing Monday and Friday as free days. I can breathe easily on those two days, without anyone coming to the house, and know that the house can stay messy if it's messy. Though I'm very grateful for all of the services we receive and know that they have helped Matthew significantly, it's a lot to juggle with 4 little kids, nap times, feeding times, school work, etc. Once Maria's school year is complete we have a wide open schedule with no activities, so bring on the therapy! Our annual meeting is next Monday, it's a therapy pow-wow where all 3 therapists, our service coordinator, and the county EIOD come together and write up Matthew's new IFSP.

Some of Matthew's recent accomplishments... he's creeping on all fours and pulling up to stand! This is huge, for the longest time his little legs were like Jell-O and bottomed out whenever we would stand him up. And now he's doing it all alone! He still has a fast army crawl and usually beelines for the bathroom, the floor vents, or the front storm door. We're working on cruising, or moving along standing up, now. His babbling has really picked up. Just a couple weeks ago, clear as day, he said, "Hiii Dada." He says a loud, grunting "Hiii" to everyone and waves. He's clapping often and lights up when we sing, "If You're Happy and You Know It." And tonight he did his first sign, "more." Matthew's still nursing about 4 times a day but has tried regular milk and yogurt and liked them. He still doesn't get the hang of the straw cup but does well drinking from a regular cup. He generally eats bananas and rice cereal for breakfast, crackers and a Stage 2 tub for lunch, and another Stage 2 tub for dinner along with food we're eating chopped up into small pieces. Most of the food he spits right back out, but at least he's taking part in what we're eating. The kid could live on crackers if I allowed it though.

But enough of those stats and facts... his favorite things to do is play with his siblings and watch them as they run all around him. They are so sweet to him and he just adores them.

In their "nest"

"Hiiii Dada!"

We have a creeper!

Trying out the car

Hi!

Soccer night at the park

Mass with Daddy

Our family at Matthew's aunt's First Communion, also pictured with grandparents and aunts and uncles

A special time with his great-grandma

Matthew is One!

Here are the pictures from Matthew's birthday bash last night. He was loving all of the attention, opening presents, and his blue cake! The past year has flown by and it was so much fun celebrating this special little guy!



And a few videos to show some of the fun!:

Matthew's First Birthday

Matthew's First Easter

I said it before at Christmas and I'll say it again for Easter, there's something so special about a baby's first Easter! Matthew thoroughly enjoyed Easter Sunday, from getting all dressed up to trying his first chocolate bunny. Here are some pictures, including one with his Uncle Luke, who joined us for the special day after he celebrated his Masses.

 

 

 

 

 

 

New Friends

One of the perks of being a mom to a child with Down syndrome is meeting so many new mommy friends! Mentioned previously, my Facebook Ds moms group has been a wonderful support system since we all have kids going through similar stages (our kids were all born between 2012 and 2013). Over the weekend we were able to meet a mom I've connected with and a new buddy for Matthew (born just a few weeks before Matthew) while they were in New York for Easter. It was so nice to officially meet and we were sure to take some pictures of our little guys together. Thank you, Troy and Tobin for the visit!

 

 

 

Molecular roots of Down syndrome unraveled

Interesting article about Down syndrome research from Science Daily:

Mar. 24, 2013 — Researchers have discovered that the extra chromosome inherited in Down syndrome impairs learning and memory because it leads to low levels of SNX27 protein in the brain. 

What is it about the extra chromosome inherited in Down syndrome -- chromosome 21 -- that alters brain and body development? Researchers at Sanford-Burnham Medical Research Institute (Sanford-Burnham) have new evidence that points to a protein called sorting nexin 27, or SNX27. SNX27 production is inhibited by a molecule encoded on chromosome 21. The study, published March 24 in Nature Medicine, shows that SNX27 is reduced in human Down syndrome brains. The extra copy of chromosome 21 means a person with Down syndrome produces less SNX27 protein, which in turn disrupts brain function. What's more, the researchers showed that restoring SNX27 in Down syndrome mice improves cognitive function and behavior. Continue Reading...

What an exciting time for Matthew to live in!

World Down Syndrome Day

One year ago today, on 3/21, I remember checking Facebook and seeing various pictures of people with Down syndrome and a reference to 'World Down Syndrome Day.' With the thought of Matthew's sandal gap in my mind, those posts allowed me to learn a little bit about Trisomy 21, even though I didn't know that I would have my own baby with an extra chromosome just a few weeks later! That's the reason why this day was created (on 3/21, for 3 copies of the 21st chromosome)- to bring awareness to Down syndrome and educate those on a cause that has so many misconceptions and generalizations. The kids and I started our homeschooling day by talking about Down syndrome and watching this video, created by the International Down Syndrome Coalition:


They liked seeing all of the faces on the videos and Michael Jr. thought that the little boy in the last frame looked like him (with his 'spiky hair,' the same hairstyle that we give him after baths). After the video I read them We'll Paint the Octopus Red on my iPhone, choking up as I got to the end of the story. Free on iTunes, you should check it out if you haven't already!


This was my favorite image from today:


That little boy, named Michael, is the son of Doug Billings, who speaks about him here:


Through this new little journey of ours, we have been able to meet so many others who are a part of this community, both in person and virtually. In addition to our local group, Facebook has been a great outlet in joining together with other moms who have kids around Matthew's age. We have all experienced similar thoughts through this whole process in a short period of time and I know I can always look to them for advice and encouragement. However, I need to give a huge shout out to all of our family and friends, who have always been supportive during this past year. I'm feeling the Matthew love today! Next up, Easter and his 1st birthday!

Happy St. Patrick's Day!

A new pope and a milestone!

Today was an exciting day as we followed the election of Pope Francis! I had been teaching about the papacy during school lately and Maria and Michael have been talking a lot about the black and white smoke. I appreciated how interested they were in the whole process and how two different colors of smoke could get the point across to them so well. They were in naps when I saw the white smoke, so I called them down to see the coverage on EWTN. Habemus Papam!


This may not seem like a big deal to most, but Matthew had a big accomplishment today- going from being on all fours (quadruped) to sitting. We've been working on this a lot during PT and Matthew has always resisted a lot. His therapist encouraged him to get into the sitting position by either starting in a side-lying position or on all fours, he chose the latter. We are proud parents tonight!


We're in the midst of tax season and Michael continues to work long hours throughout the week. Bedtime is a special time for daddy and his kids, especially for Matthew. Lately they've been playing the monster game, where an undressed Matthew goes after his siblings.

Matthew at the Museum

We had a night out at the Mid Hudson Children's Museum with the Down Syndrome Association of the Hudson Valley tonight. We were happy to meet some more families, including some that will be in a playgroup for the younger kids (0-3 y/o). The closest in age to Matthew was an adorable little girl, just 1 week older. I wish I had some pics of the kids together but here's a little video of Matthew enjoying himself.



And a few pictures of our little guys:

A Bear at Bear Mountain

We went to Bear Mountain for a little ice skating today. Coincidentally Matthew was dressed in his warm bear suit, so of course, I had to take some pictures of our little bear at Bear Mountain. We are looking forward to when Matthew can join his siblings ice skating when he's older!